I have written a book on the politics of autism policy. Building on this research, this blog offers insights, analysis, and facts about recent events. If you have advice, tips, or comments, please get in touch with me at jpitney@cmc.edu

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Friday, May 24, 2013

Autism, Asperger, and DSM-5

Only a few studies have evaluated whether the DSM-5 criteria will prove more or less exclusionary, and they have been inconsistent, to put it mildly. Judith Ursitti, mother of two children on the spectrum and the director of state and government affairs for Autism Speaks, points to one study by APA task force member Lord suggesting that only about 10 percent of individuals currently diagnosed would not meet DSM-5 criteria; a study by Fred Volkmar, director of the Child Study Center at the Yale School of Medicine, however, found that a staggering 75 percent of those with Asperger’s and 85 percent of those with PDD-NOS would fail to meet the new requirements. “If it plays out the way the APA says it’s going to, it should be fine. It should just be a name change,” Ursitti says. But Autism Speaks isn’t taking the APA’s word for it. The organization is funding a study with the Centers for Disease Control and Prevention to assess the impact of the new criteria, and it has also already designed two online surveys so families, teachers, doctors, and other providers can report their experiences.

It’s not only the fear of losing diagnoses that has parents and diagnosed individuals challenging the APA. Some say that the word autism carries a greater stigma, which may keep high-functioning individuals and their families from pursuing a diagnosis and the support that comes with it. As high-school senior Hannah Fjeldsted, who has Asperger’s, articulated clearly (if a bit insensitively) in a guest blog post at Autism Speaks, “The label of Asperger’s at least gives observers the impression of intelligence and ability. But when most people think of ‘autism,’ they think of someone who should be institutionalized.” Hibben also expresses concern over whether his son will embrace his diagnosis when he’s a teenager. “Now it’s almost cool to have Asperger’s,” he points out. “The Big-Bang Theory and Parenthood feature characters who have it.”

Previous posts have also discussed pushback from parents of lower-functioning kids.

Parents of lower-functioning kids are also concerned about how the influx of high-functioning individuals will affect the public’s perception of autism—mainly because they feel autism is a serious disorder that people should associate with profound disability. One mother commented online that “the proposed DSM change would diminish the enormity of the challenges that those with moderate to severe autism have.” Ursitti, who has a daughter with Asperger’s and a son with severe autism, feels this is already happening: “If we have this national perspective that autism is a blessing, that it’s not a crisis, the ones who will lose out are the expensive ones, the severe ones. Legislators focus on the cheapest option, and celebration is cheaper than treatment.”